As a retired psychologist, I assure you that this is NOT psychosomatic, malingering, hysteria, hypochondria, or anything else that is not engaging actual physically medical symptoms. Not knowing is very depressing. Letting go of you dreams and plans is depressing. Losing your career is very depressing. Losing the support of your loved ones is depressing. Being confused after being clear is depressing and sometimes frightening. Having docs you are ignorant blame it on depression. Ignore them.
So grateful for this video! Hearing of other peoples experiences with the condition and it's bewildering array of symptoms helps me feel less isolated in my own struggle. My empathy goes out to you all.
Thank you! I sleep 12 hours a night straight thru as I’m on sleeping meds and never wake up refreshed. It takes a good 2 to 3 hours before I can “function”. It has become my normal now so to me it’s not a huge deal, but when others ask me if I’m ready for the day, and I say no, the look on their face is utter surprise and shock!
Chemical smells bring on very bad ME symptoms and medication can cause such weird reactions that any meds i have to take I start on a miniscule amount. Thank you for all you do.
Thanks! Your voice is easy to listen to. 😊 re: Depression: many studies and clinicians show us that chronic inflammation of the brain can result in depression. This model is even being considered for depression amongst otherwise healthy people. So our condition can cause depression biologically and experientially.
A couple more : Sensitivity to changes in weather or barometric pressure This one causes my blood volume to “drop” and I am not only dizzy but feel as if I am unreal, floating and have no perception of where the ground is when I take a step. My body has a weird sensation of effervescing. Tongue swelling. Sudden and extreme drop in energy. Like someone just pulled a plug and there is nothing left. Has created some difficult situations. MUST lie ( not just sit) down asap. People have thought I was being dramatic for attention.
This is a great topic, I can finally see why I suffer the tingling and numbness and dizziness as I didn’t realise that it was common in CFS/ME … another problem I have is my senses are all over loaded .. I can’t handle noise around me - I sit in my room often I silence - at work there is often a clash of music so I have to listen to audio books or music just to make it one sound - come break time I shut myself in a dark room alone and listen to relaxation videos … I used to go to loads of gigs but now rarely do it - I work 4 nights a week and sleep most the rest of my time 😢
The numbness is a weird one indeed - I mostly feel it in my shoulder blades and face. Also hard to explain to the neurologist 😅 As are the muscle twitches/spasms I regularly experience in arms, legs, fingers, ... sometimes for days on end. All I've been told is that all of this is categorized as 'benign fasciculations'.
Diagnosed 5 years ago. Destroyed my relationship with mother and sister who to this day have made it a no talk topic as they have decided I was misdiagnosed and instead have a mental/personality disorder, which had been devastating for me. Very isolating and alienating. Any research or advise for family I try to share with them is completely ignored and the mere action on my behalf just seems to further validate for them that I’m mentally I’ll so they don’t bother to open the link. Now I just give up and understand that their gaslighting response alone can trigger a flare up as it causes me such emotional stress. Haven’t seen them in 4 years due to Covid and differing views on the vaccines. Mother 95 and I fear I will not see her before she dies but the idea of seeing her makes me feel so apprehensive and afraid that it will trigger a huge relapse. Sad. This illness has taught me so much and my health now improves month by month by listening intently to my bodily responses and my intuition
26 years here, my symptoms change and evolve, they come and go and come back. Just got my test results back from the neurologist, low B6 and B12 can cause the tingeling and numbness. Mine has plummeted. I have not been depressed at all , oddly so, cause this is shit. I am type A. My best advice is to break things into small bites to get things done. Super food and supplement sensitivity. Good morning my friend in this daily nonsense. Merry Christmas!
My personality type is definitely at odds with the condition! I mean, I can be so inflexible that I intentionally cause myself harm... over and over again, in a repeated cycle.
My limbs go numb and tingle all the time. Something people without ME struggle to grasp is how we have to fight for everything. Going to sleep, waking up, breathing, opening our eyes , talking, etc. I think sometimes just the exhaustion of having to fight for everything causes depression,you get tired of fighting all the time.That in and of itself is exhausting. Anyone else affected by dreams? I can tell how well I’ve slept based on my dreams. They are always vivid, and often very complex stories. The more weird and vivid usually means I haven’t really gotten any good sleep.I feel that my mind never truly goes into a rest state. I can physically zone out, and kind of turn my brain off if I want. I’ve done it once before, and that state is hard to come out of. So I’m kind of scared to do it. I feel like that’s the only way to get my brain to really rest. But it’s kind of scary to do.😆
The zoning out is really interesting. It happens to me most nights (with frequent bursts during the day). It's like entering a trance state and can be very difficult to come out of. The biggest trigger seems to be overexertion. Wondering if the zoning out is neuro-protective or a symptom of a hypometabolic brain?
Yes, same here. I learned lucid dreaming, and it really helped me. I dream very vivid and intense as well as creepy stuff. Now, I'm able to control it most of the time and change the dream to a positive one. If I can't, I move my eyes often and quickly, and this way I wake up. I've read that some people who had infections lean towards this kind of weird dreaming. ME is such a misunderstood and cruel disease. I wish you all the best!
The 5 senses have gone into overdrive.Touch:Rare occasions I'm touched feels like I'm being attacked.Hairdressers/massage feels like torture. Taste:Had no problems eating a vindaloo before i got M.E, now not on your Nelly!Sight:Been diagnosed with cataracts and had partial sight loss in part of left eyes field of vision etc Hearing:Tinnitus and slight hearing loss.Smell:Especially if I'm feeling really rotten,any awful smells, especially if they eminate from people(Have only found bad smells coming from men) Body odour,unwashed bodies,bad breath( one man's breath was so bad and smelt of moth balls that i nearly vomited!😨Feel 300 but only in early 50s.Should feel depressed but don't.Only times depressed were when seeing an abusive Dr and abusive Ex.Could go on but won't! Happy Holidays everyone and thanks Fight4ME(Sorry forgotten your name) for being the calm in the storm.😊
When I went 2 my specialist about my schleroderma & I was telling her about several symptoms I was experiencing she had mentioned 2 me I possibly have C.F.S. I had never heard of this b4 so when I got home I searched wut C.F.S was an as I was reading I was shocked c n I had almost every symptom that was on there. It explained so much! On top of that I also have back issues. I just found out I have 2 discs in my back that r starting 2 bulge, a pinched sciatica nerve, scoliosis and degenerative disc disease so tryna deal w/all of this has been such a horrible experience. I struggle daily dealing w/chronic pain then add on the C.F.S (chronic fatigue syndrome)& no pain medication or any kind of medication 4 the cfs an I barely get thru my days. I lift any1 & everybody experiencing sickness or illness up in prayer, my heart goes out 2 u. I no nowadays drs won’t give u the proper medications they need just 2 manage thru their days. I pray u all get sum treatment 2 b able 2 survive everything ur dealing with a get u the help u need. God bless u all!!
I get this too - though it isn't something I have heard of in other people with M.E. Do you also get redness and dilated blood vessels? Not sure if it is a condition in itself like Erythromelalgia (which is, thankfully, benign) or purely down to M.E.
Check out one of the polls I did, it seems tingling, and neuropathy is not uncommon amongst people with M.E. Small sample size, but I was surprised to see it was not uncommon.
Re depression, it seems reasonable to me that some (or many!) of us experience that *because* of the illness: it's frickin depressing! That said, I notice those feelings come along with a flare for me... it's almost like my body expresses its feelings about being sick. I don't get migraines thank God. But paresthesia OH yeah! All over my body. I find the head tingles quite pleasant 🤗. The rest of it is mildly annoying but nothing earth-shattering. Yet anyway. This year right about now is the 6 year mark for me. I'm in a major relapse after having worked my way from bedbound to about 65% functional. The paresthesia hit the big time during this relapse. Thanks for the heads-up, Johnny, re having the doc check that out for other illnesses. I have a terrific new PCP and I'll def get with him on it. Lightheaded and dizzy OH yeah. I've been known to fall against walls when turning a corner or walking down a hallway 🤣😂. I too can fall over tying my shoelaces. Again I don't worry too much about it. Tinnitus for sure. Intermittent insomnia but I've had really good luck with being rigorous about sleep hygiene and my sleep is pretty good right now.
@@fight4me747 we did when I was diagnosed 2 years ago. But in light of what's going on now I think it's time for another CT scan. I'm seeing my doc again in a few weeks so I'll def bring it up then. Thanks, hunny.
I had depression like you right at the beginning due to loss of career, fitness etc. I now manage health anxiety due to Covid and being terrified because our immune system is compromised. Ive had ME 27 years - people still judge me by how I look which us absurd. So happy I found your channel.
@@fight4me747 Thought I possibly had C19 mild at the very beginning and about a month after irregular heartbeats started along with being unable to stand for too long first thing when I get up. Can't have Vaccine due to bad reactions: facial numbness& fireworks throughout the body within 20 minutes with one and Afib with 3rd. This is such a godsend funding. From what I gather on FB ME Vaccine page is that the vaccine is far worse than COVID - have you found that?
I have that parasthsia (sp?) it causes me to lose grip, not sure that’s related. I feel so much better watching your videos. My diagnosis is only a month old. I finally got a neurologist to diagnose me.
Yep, medicine sensitivities and side effects. NOTE: If you are a redhead, check for MC1R gene which is the redhead gene and that adds more medication side-effects and other possible symptoms. Pull out your hair, and it won't matter because if you have the gene, it's just a nothing thing in the soup pot. Any comorbidity is.
I developed me/cfs after receiving the Covid vaccine. I also have fibromyalgia. My best friend who I live with does not understand. It is really frustrating. He thinks if I just push myself I can get better.
Thank you👌very true all those symtoms and more If I had only knew a few years ago I would have searched for the right help then instead of trying to push through🙏 I think many of the invisible symtoms actually are visible to in a way.. For exempel I reslly look sick and somtimes swollen in my face and completley out of energy..it's not the same vitality and stamina and it shows
3 weeks of insomnia right now. First time for this. Usually once or twice a week with over stimulation of my brain but I went to pigeon forge 3 weeks ago and looked at Christmas lights and walked around and looked at the Christmas stuff and it triggered something 3 nights I haven’t slept at all and still had insomnia that night. Another new thing added is eczema. I used to get random rashes but now it eczema
I don’t have migraines. But I have these headaches not headaches and it’s localized to one area and it shoots. Then goes away. Sometimes it shoots so painful I will hold my head. And then it goes away. Do you know how crazy you sound telling your doctor ?
I feel for you! The brain 'zaps' were a regular thing for me until a couple of years ago. The main triggers were overexertion, sensory overload and impaired sleep; though there were never any warnings when they would occur.
" those who insist on turning bright flourescent lights on a sunny day with loads of light. Inconsiderate and stupid people are out there. there are people who do things to irritate on purpose. We have a few in our building complex. I leave if toxic people come in our communal tv room. I cannot stare up into such those lights. Scintilating scotomas ensue with the aura lasting 20 minutes Keep away from.difficult people who enjoy friction.
My pain is like migraine in my shoulders armpits 24/7 I used to get migraine neurologist says this is migraine in diffarant place anyone else have this
Yes, me. It first appears in my left shoulder blade area and over days, creeps down to bottom of my left ribs area. The pain is horrendous and makes me cry. Then, after the pain has largely gone, the skin under my ribs and left breast goes numb to the touch. Last year (2023) I also had similar on my right side. Not as bad but my armpit went numb. Very odd. Doctor put me on Amytriptoline for the pain. And last week, I had an MRI scan after having another left sided attack which completely baffled my GP. Very odd. But I likened it to migraine.
@@borleyboo5613 does it feels though it's pulling you to like tight are you hypermobile? Thankyou for replying I get it daily it started in my throat 7 years ago then chest as I said neurologist says it's chronic mygraine amitrytelene helps but makes me out in to much weight
As a retired psychologist, I assure you that this is NOT psychosomatic, malingering, hysteria, hypochondria, or anything else that is not engaging actual physically medical symptoms. Not knowing is very depressing. Letting go of you dreams and plans is depressing. Losing your career is very depressing. Losing the support of your loved ones is depressing. Being confused after being clear is depressing and sometimes frightening. Having docs you are ignorant blame it on depression. Ignore them.
I appreciate this so very much!
So grateful for this video! Hearing of other peoples experiences with the condition and it's bewildering array of symptoms helps me feel less isolated in my own struggle. My empathy goes out to you all.
Really appreciate you making these videos.
Glad you like them! Thanks for watching
Thank you! I sleep 12 hours a night straight thru as I’m on sleeping meds and never wake up refreshed. It takes a good 2 to 3 hours before I can “function”. It has become my normal now so to me it’s not a huge deal, but when others ask me if I’m ready for the day, and I say no, the look on their face is utter surprise and shock!
Chemical smells bring on very bad ME symptoms and medication can cause such weird reactions that any meds i have to take I start on a miniscule amount.
Thank you for all you do.
Thanks! Your voice is easy to listen to. 😊 re: Depression: many studies and clinicians show us that chronic inflammation of the brain can result in depression. This model is even being considered for depression amongst otherwise healthy people. So our condition can cause depression biologically and experientially.
A couple more :
Sensitivity to changes in weather or barometric pressure
This one causes my blood volume to “drop” and I am not only dizzy but feel as if I am unreal, floating and have no perception of where the ground is when I take a step. My body has a weird sensation of effervescing.
Tongue swelling.
Sudden and extreme drop in energy. Like someone just pulled a plug and there is nothing left. Has created some difficult situations. MUST lie ( not just sit) down asap. People have thought I was being dramatic for attention.
This is a great topic, I can finally see why I suffer the tingling and numbness and dizziness as I didn’t realise that it was common in CFS/ME … another problem I have is my senses are all over loaded .. I can’t handle noise around me - I sit in my room often I silence - at work there is often a clash of music so I have to listen to audio books or music just to make it one sound - come break time I shut myself in a dark room alone and listen to relaxation videos … I used to go to loads of gigs but now rarely do it - I work 4 nights a week and sleep most the rest of my time 😢
The numbness is a weird one indeed - I mostly feel it in my shoulder blades and face. Also hard to explain to the neurologist 😅 As are the muscle twitches/spasms I regularly experience in arms, legs, fingers, ... sometimes for days on end. All I've been told is that all of this is categorized as 'benign fasciculations'.
Diagnosed 5 years ago. Destroyed my relationship with mother and sister who to this day have made it a no talk topic as they have decided I was misdiagnosed and instead have a mental/personality disorder, which had been devastating for me. Very isolating and alienating. Any research or advise for family I try to share with them is completely ignored and the mere action on my behalf just seems to further validate for them that I’m mentally I’ll so they don’t bother to open the link. Now I just give up and understand that their gaslighting response alone can trigger a flare up as it causes me such emotional stress. Haven’t seen them in 4 years due to Covid and differing views on the vaccines. Mother 95 and I fear I will not see her before she dies but the idea of seeing her makes me feel so apprehensive and afraid that it will trigger a huge relapse. Sad. This illness has taught me so much and my health now improves month by month by listening intently to my bodily responses and my intuition
Sorry to hear about your struggles with your family
26 years here, my symptoms change and evolve, they come and go and come back. Just got my test results back from the neurologist, low B6 and B12 can cause the tingeling and numbness. Mine has plummeted.
I have not been depressed at all , oddly so, cause this is shit. I am type A. My best advice is to break things into small bites to get things done.
Super food and supplement sensitivity.
Good morning my friend in this daily nonsense. Merry Christmas!
My personality type is definitely at odds with the condition! I mean, I can be so inflexible that I intentionally cause myself harm... over and over again, in a repeated cycle.
Same as you 26 years pain is worst symptom nowadays
@@Truerealism747 I'm sorry.
My limbs go numb and tingle all the time. Something people without ME struggle to grasp is how we have to fight for everything. Going to sleep, waking up, breathing, opening our eyes , talking, etc. I think sometimes just the exhaustion of having to fight for everything causes depression,you get tired of fighting all the time.That in and of itself is exhausting. Anyone else affected by dreams? I can tell how well I’ve slept based on my dreams. They are always vivid, and often very complex stories. The more weird and vivid usually means I haven’t really gotten any good sleep.I feel that my mind never truly goes into a rest state. I can physically zone out, and kind of turn my brain off if I want. I’ve done it once before, and that state is hard to come out of. So I’m kind of scared to do it. I feel like that’s the only way to get my brain to really rest. But it’s kind of scary to do.😆
Omg nearly nightly 😳 its like I've watch a film all night long. Sending love from London 🇬🇧💜
Really relate to the never feeling rested, and having active deams and being exhausted by them.
The zoning out is really interesting. It happens to me most nights (with frequent bursts during the day). It's like entering a trance state and can be very difficult to come out of. The biggest trigger seems to be overexertion. Wondering if the zoning out is neuro-protective or a symptom of a hypometabolic brain?
Yes, same here. I learned lucid dreaming, and it really helped me. I dream very vivid and intense as well as creepy stuff. Now, I'm able to control it most of the time and change the dream to a positive one. If I can't, I move my eyes often and quickly, and this way I wake up.
I've read that some people who had infections lean towards this kind of weird dreaming.
ME is such a misunderstood and cruel disease. I wish you all the best!
@@sannivanni Interesting! I got CFS from infections, so that would make sense! Thanks for letting me know!😊
The 5 senses have gone into overdrive.Touch:Rare occasions I'm touched feels like I'm being attacked.Hairdressers/massage feels like torture. Taste:Had no problems eating a vindaloo before i got M.E, now not on your Nelly!Sight:Been diagnosed with cataracts and had partial sight loss in part of left eyes field of vision etc Hearing:Tinnitus and slight hearing loss.Smell:Especially if I'm feeling really rotten,any awful smells, especially if they eminate from people(Have only found bad smells coming from men) Body odour,unwashed bodies,bad breath( one man's breath was so bad and smelt of moth balls that i nearly vomited!😨Feel 300 but only in early 50s.Should feel depressed but don't.Only times depressed were when seeing an abusive Dr and abusive Ex.Could go on but won't! Happy Holidays everyone and thanks Fight4ME(Sorry forgotten your name) for being the calm in the storm.😊
My senses are also heightened. Sounds and smells bother me so much
Yes. I can’t stand it when my dog lays up against me anymore. I let him for a but I can’t handle it for long. And noise. I can’t have a lot of noise
When I went 2 my specialist about my schleroderma & I was telling her about several symptoms I was experiencing she had mentioned 2 me I possibly have C.F.S. I had never heard of this b4 so when I got home I searched wut C.F.S was an as I was reading I was shocked c n I had almost every symptom that was on there. It explained so much! On top of that I also have back issues. I just found out I have 2 discs in my back that r starting 2 bulge, a pinched sciatica nerve, scoliosis and degenerative disc disease so tryna deal w/all of this has been such a horrible experience. I struggle daily dealing w/chronic pain then add on the C.F.S (chronic fatigue syndrome)& no pain medication or any kind of medication 4 the cfs an I barely get thru my days. I lift any1 & everybody experiencing sickness or illness up in prayer, my heart goes out 2 u. I no nowadays drs won’t give u the proper medications they need just 2 manage thru their days. I pray u all get sum treatment 2 b able 2 survive everything ur dealing with a get u the help u need. God bless u all!!
Thank you for your videos. Unrefreshing sleep is a daily drag.I was wondering if you could talk more about bio markers for ME/CFS. Thanks.
Hey there, I will try and speak on that a little more. Happy Holidays.
Tingling/burning/painful feet is a significant one for me
I get this too - though it isn't something I have heard of in other people with M.E. Do you also get redness and dilated blood vessels? Not sure if it is a condition in itself like Erythromelalgia (which is, thankfully, benign) or purely down to M.E.
Check out one of the polls I did, it seems tingling, and neuropathy is not uncommon amongst people with M.E. Small sample size, but I was surprised to see it was not uncommon.
Re depression, it seems reasonable to me that some (or many!) of us experience that *because* of the illness: it's frickin depressing! That said, I notice those feelings come along with a flare for me... it's almost like my body expresses its feelings about being sick. I don't get migraines thank God. But paresthesia OH yeah! All over my body. I find the head tingles quite pleasant 🤗. The rest of it is mildly annoying but nothing earth-shattering. Yet anyway. This year right about now is the 6 year mark for me. I'm in a major relapse after having worked my way from bedbound to about 65% functional. The paresthesia hit the big time during this relapse. Thanks for the heads-up, Johnny, re having the doc check that out for other illnesses. I have a terrific new PCP and I'll def get with him on it. Lightheaded and dizzy OH yeah. I've been known to fall against walls when turning a corner or walking down a hallway 🤣😂. I too can fall over tying my shoelaces. Again I don't worry too much about it. Tinnitus for sure. Intermittent insomnia but I've had really good luck with being rigorous about sleep hygiene and my sleep is pretty good right now.
Hey there, have you ruled out MS? Hope all is well.
@@fight4me747 we did when I was diagnosed 2 years ago. But in light of what's going on now I think it's time for another CT scan. I'm seeing my doc again in a few weeks so I'll def bring it up then. Thanks, hunny.
I had depression like you right at the beginning due to loss of career, fitness etc. I now manage health anxiety due to Covid and being terrified because our immune system is compromised. Ive had ME 27 years - people still judge me by how I look which us absurd. So happy I found your channel.
Have you had c19 yet? How did you do?
@@fight4me747 Thought I possibly had C19 mild at the very beginning and about a month after irregular heartbeats started along with being unable to stand for too long first thing when I get up. Can't have Vaccine due to bad reactions: facial numbness& fireworks throughout the body within 20 minutes with one and Afib with 3rd.
This is such a godsend funding. From what I gather on FB ME Vaccine page is that the vaccine is far worse than COVID - have you found that?
@@chihuahuapixieprincess2482 for sure wouldn't touch any that with barge pole
I have that parasthsia (sp?) it causes me to lose grip, not sure that’s related. I feel so much better watching your videos. My diagnosis is only a month old. I finally got a neurologist to diagnose me.
Im happy to hear the videos offer some help. I hope your journey with M.E. is a mild and manageable one.
Yep, medicine sensitivities and side effects. NOTE: If you are a redhead, check for MC1R gene which is the redhead gene and that adds more medication side-effects and other possible symptoms. Pull out your hair, and it won't matter because if you have the gene, it's just a nothing thing in the soup pot. Any comorbidity is.
Yes to parasthesia!
I developed me/cfs after receiving the Covid vaccine. I also have fibromyalgia. My best friend who I live with does not understand. It is really frustrating. He thinks if I just push myself I can get better.
Thank you👌very true all those symtoms and more
If I had only knew a few years ago I would have searched for the right help then instead of trying to push through🙏
I think many of the invisible symtoms actually are visible to in a way..
For exempel I reslly look sick and somtimes swollen in my face and completley out of energy..it's not the same vitality and stamina and it shows
3 weeks of insomnia right now. First time for this. Usually once or twice a week with over stimulation of my brain but I went to pigeon forge 3 weeks ago and looked at Christmas lights and walked around and looked at the Christmas stuff and it triggered something 3 nights I haven’t slept at all and still had insomnia that night. Another new thing added is eczema. I used to get random rashes but now it eczema
I don’t have migraines. But I have these headaches not headaches and it’s localized to one area and it shoots. Then goes away. Sometimes it shoots so painful I will hold my head. And then it goes away. Do you know how crazy you sound telling your doctor ?
I feel for you! The brain 'zaps' were a regular thing for me until a couple of years ago. The main triggers were overexertion, sensory overload and impaired sleep; though there were never any warnings when they would occur.
❤❤❤
" those who insist on turning bright flourescent lights on a sunny day with loads of light. Inconsiderate and stupid people are out there. there are people who do things to irritate on purpose. We have a few in our building complex. I leave if toxic people
come in our communal tv room. I cannot stare up into such
those lights. Scintilating scotomas ensue with the aura lasting 20 minutes
Keep away from.difficult people who enjoy friction.
My pain is like migraine in my shoulders armpits 24/7 I used to get migraine neurologist says this is migraine in diffarant place anyone else have this
Yes, me. It first appears in my left shoulder blade area and over days, creeps down to bottom of my left ribs area. The pain is horrendous and makes me cry. Then, after the pain has largely gone, the skin under my ribs and left breast goes numb to the touch.
Last year (2023) I also had similar on my right side. Not as bad but my armpit went numb. Very odd. Doctor put me on Amytriptoline for the pain. And last week, I had an MRI scan after having another left sided attack which completely baffled my GP. Very odd. But I likened it to migraine.
@@borleyboo5613 does it feels though it's pulling you to like tight are you hypermobile? Thankyou for replying I get it daily it started in my throat 7 years ago then chest as I said neurologist says it's chronic mygraine amitrytelene helps but makes me out in to much weight
@@borleyboo5613 also does it feel pulse like migraine and sore it changes over the day